Serious and long-lasting conditions like kidney failure affect many parts of a child's life. Having kidney failure influences a child's self-image and relationships with peers and family. It can lead to behavior problems and make achieving goals more difficult. Being aware of these problems can help you recognize that your child may need some additional guidance or understanding at times.
Areas Where Your Child May Need Help
Kidney disease can cause learning problems. The buildup of wastes in the body can hamper nerve and brain function. Your child may have problems concentrating and may develop language and motor skills more slowly than peers. The most severe problems occur when kidney disease is present early in infancy. Fortunately, transplantation can reverse most of these conditions. Adequate dialysis can also improve or correct these problems. If they receive appropriate treatment, most children with kidney disease can attend school and graduate from high school. Many go on to college or vocational school.
Having as normal a life as possible can help a child feel more like other children. Going to school is especially important. You are likely to encounter many people who are unaware of how kidney disease affects a child, so you may need to inform teachers and classmates of some of the possible problems.
Children who have in-center hemodialysis or frequent medical appointments may miss several hours of school each week. These absences can compound the learning problems that many children with kidney failure face. You should make every effort to schedule your child's treatments around the school schedule.
The Individuals with Disabilities Education Act (IDEA, Public Law 94-142) states that every child is entitled to an appropriate education and directs school districts to provide special services to ensure that children with disabilities are able to participate in regular classrooms to the fullest possible extent. Your child may need tutoring or vocational rehabilitation. Work with school counselors to find the best arrangement for letting your child work at a comfortable pace while also spending time with other children.
Dealing With Low Self-Esteem
The physical effects of kidney disease can make children feel depressed and powerless. Learning and growth problems may contribute to low self-esteem. Children with functioning transplants seem to have fewer problems because they are less dependent on health professionals. Children who have as much control and responsibility as possible over their own care can feel empowered.
Older children can take the lead in performing their peritoneal dialysis exchanges, preparing home hemodialysis equipment, and learning about their medication doses and purpose.
Following Medical Instructions
Health professionals use the terms "noncompliance" or "nonadherence" to describe a patient's failure or refusal to take prescribed medicines or follow a doctor's directions. Teenagers with transplanted organs may be noncompliant because the immunosuppressive drugs they must take change their appearance in unflattering ways.
A child psychologist may be able to suggest techniques that reinforce desired behaviors. But communicating clearly about the reasons for treatment and the importance of following the regimen is an important part of helping all patients, including children. Children who understand that their decisions can affect their health are more likely to take responsibility for their actions.
Engaging in Sports or Physical Activity
In some cases, a doctor may recommend that a child restrict physical activity and get plenty of bed rest. In general, however, exercise has physical and psychological benefits. Parents or guardians may feel protective of a sick child, but they should not try to limit their child's activity unless instructed by a doctor. Some children may even need to be encouraged to get outside and play to control blood glucose and improve their blood pressure and the condition of the heart.
People with transplanted organs have demonstrated the ability to compete in sports. Not everyone can be an exceptional athlete, but every year the Transplant Games, sponsored by the National Kidney Foundation, allow people with transplants to participate in friendly competition and show the world that transplantation provides a new lease on life and health.
Children with kidney disease may have trouble fitting in with children of their own age because of their small stature, their delayed cognitive development, or the physical effects of immunosuppressive drugs. Some child psychologists specialize in helping to integrate children with disabilities and medical problems into mainstream activities.
Participating in regular classroom and extracurricular activities can help your child develop social skills. Many areas have summer camps for children with special needs. Your clinic's social worker may be able to help you find appropriate activities.
Preparing to Enter the Work Force
Young adults who have been treated for kidney failure during childhood must overcome a number of barriers to prepare for a career and find a job. The effects of kidney disease can make learning and academic achievement difficult. Completing the training required for employment takes extra effort, and some people with kidney disease report that their small stature creates problems in fitting into adult environments. Employers may have trouble understanding kidney problems and may be reluctant to hire someone whose medical problems could raise their group insurance rates. Those with functioning transplants generally fare best in finding satisfying jobs.
People Who Can Help
Many skilled professionals are available to ensure that your child gets the best possible care. In addition to the medical staff at your clinic, you should meet with people whose job is to help you find the resources you need so you can fulfill your other obligations at work and home.
Every dialysis clinic and transplant center has a social worker who can help you locate financial assistance, identify social services like transportation or family counseling, and help with applications for Medicare. The social worker can tell you about support groups in your community and ways to reduce the stress of caring for a child with a chronic illness.
Psychologist, Psychiatrist, or Counselor
Kidney disease can disrupt a child's life and create emotional turmoil. A psychologist or counselor can help your child find ways to express emotions constructively. Adults and siblings may also find that counseling helps them with the conflicts and stresses they face. For example, medical bills can strain family finances. A parent or guardian may need to give up work to care for the child full-time. Siblings may feel resentment over the huge amount of attention given to their sibling and guilt over thinking bad thoughts about the sick child. Couples sometimes report increased tension in their marriage when a child is sick. A counselor can help families deal with conflicts, and social workers or financial counselors can help families meet the financial obligations that chronic illness creates.
National Kidney and Urologic Diseases Information Clearinghouse
3 Information Way
Bethesda, MD 20892–3580
The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.
Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.
Publications produced by the Clearinghouse are carefully reviewed by both NIDDK scientists and outside experts. The NKUDIC would like to thank Barbara Fivush, M.D., and Kathy Jabs, M.D., of the American Society of Pediatric Nephrology (ASPN), for coordinating the review of this publication by the ASPN's Clinical Affairs Committee: Tej Mattoo, M.D., William Primack, M.D., Joseph Flynn, M.D., Ira Davis, M.D., Ann Guillott, M.D., Steve Alexander, M.D., Deborah Kees-Folts, M.D., Alicia Neu, M.D., Steve Wassner, M.D., John Brandt, M.D., and Manju Chandra, M.D. Frederick Kaskel, M.D., Ph.D., President, ASPN, and Sharon Andreoli, M.D., Secretary-Treasurer, ASPN, also provided comments and coordination.
This publication is not copyrighted. The Clearinghouse encourages users of this publication to duplicate and distribute as many copies as desired.
NIH Publication No. 06–5165